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~lezah~

My husband has cancer

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lezah

I love popping in and seeing new replies!

 

Thank you so much *Chyloe*, bluebb, alphabetical and most of all - ninack. Eighteen years! I can't wait to go and pick up Wayne (he decided to go and do some celebratory shopping - more on that soon) to tell him :-)

 

Here's my latest good news update - Wayne had his 3 monthly appointment yesterday and we're still stable at a myeloma count of 15! Pretty awesome for a man who started with a count of 81. Ninack - this might also give you a bit of context as to why they were fairly blunt when they told me his condition was terminal - while your dad's myeloma was caught very early, Wayne's was extremely late - any count over 5.5 is Stage III, so technically he's never gone into remission but with 3.5 years of less than 4 mg/L variance, he's considered stable.

 

So, with a bit of luck, I'll have no further medical updates until November when Wayne has his next haematologist appointment - but I promise I'll keep coming back to check in on everyone else!

 

 

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Chchgirl

x

Edited by Chchgirl

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**Kylie**
And also Chyloe, I am also very sorry to hear about your husband's prognosis. I pray that as with Lezah's husband, terminal means many, many years away.

 

A big cyber hug to you both bbighug.gif

 

Thanks!!!!!

 

Lezah......great news.

 

DH's next appt is early Oct so we are off the hook for a bit. :8

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me_n_my_kidz

Hi, I just wanted to say how sorry I am that you have to live through this and good on you for forcing your DH to see a doctor. You seem like a very strong and brave person and I wish you and your family all the best!

 

I am very glad that your DH is responding well to treatment!

 

Take Care, and BIG hugs for everyone here.

Edited by me_n_my_kidz

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trebambinibelli

Great news that your DH's myeloma count is coming down and staying down... Just came in to wish you all well and hope things continue positively for you, so sorry that this is happening to you but thank goodness you followed your instincts - thinking of you

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lezah

Damn this is hard.... but since this thread has been of such solace to me, its only fair that I'm 100% honest.

 

His count has risen from 14 to 22 within weeks.

 

Medically, this means his serum M count has increased by 25% in less than 3 months, which fulfils the definition of active disease, however his results are ‘asymptomatic’ – that is, the supporting markers – full blood count, c-reactive protein and a few others have not altered to the same level. Essentially, that means the reactivation is recent and introducing treatment as soon as possible will, theoretically, be more successful than a ‘wait and see’ for changes in the other markers to assess whether the result was an anomaly.

 

The treatment regime is Revlimid, which was actually in clinical trials in Australia when Wayne was originally diagnosed, however his condition meant that he was too unstable to participate in 2007/08. Instead, he was given the ‘standard’ regime of Thalidomide which had some very serious side effects (other than causing some very unpleasant outcomes for pregnant women). In short, he rapidly lost feeling in his arms and legs (medical term is neuropathy – layman’s is intense pins and needles) and contributed to a massive blood clot in Wayne’s leg which put him into hospital for a while and led to me injecting him with Clexane 5 times a day.

 

I was fortunate enough to speak to the haematologist at length about the new regime and how it is likely to affect him. I’ve been assured that the side effects are nowhere near as severe as Thalidomide and that Revlimid is most effective in relapse treatment. He explained that it’s similar to oral chemotherapy, so he might be a bit nauseous, cranky, tired, etc and that he’s also going to put him on bi-monthly Zometa treatment (which is the medication that increases bone strength – ironically used in treatment of myeloma and breast cancer, and at the clinic we go to, they administer Zometa to a regular group on a Friday morning – and since he’s generally the only man in the group, Wayne gets his harem back)

 

What do I really feel?

 

Truth is that I don't believe this drug will work, there's horror stories about the side effects and I truly feel this is the beginning of the end.

 

My mum tried to be strong when I told her - which just made it harder to not cry. She asked if he'd be well enough to go away at Christmas and that broke me. Call me a pessimist - this could well be the last Christmas - they always said he might make 5 years, and that was September 4 years ago.

 

I know Wayne. I know what he's like on chemo. I know what he's like in pain. And I'm scared that I'm too burned from last time to care for him. One of the hardest things for me to hear was him telling me that I'm 'cold' when he's sick. Well, I am. I care, but I'm frustrated. I can't make it better and getting abused, ignored, groaned at and generally treated like a doormat isn't pleasant.

 

I've never been under any illusions of whats going to happen. I just don't think I'll ever be ready.

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Acidulous Osprey

Oh Lezah, you don't know me from a bar of soap but I am so sorry to hear this news and my heart goes out to you. It's ****ing hard to be a carer when they are unpleasant even when realistically you know it's not a choice they are making.

 

And being ready is not something anyone would be capable of.

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Delayfish

Lezah I have just read your story tonight, I'm so sorry for what you and Wayne and your family are going through. Your accounts are amazingly honest and heartbreaking. I wish for you strength to face this journey, and will be sending positive thoughts to you. :bighug:

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CallMeFeral

I've only just arrived on this thread but just wanted to add some words of support. And I guess your story has some familiar points to me in that my mum had amyloidosis which has some similarities to multiple myeloma, and was doing the whole thalidomide clexane oral chemo thing and got peripheral neuropathy and the rest - reading this brings it all back.

 

I can't think of anything to say that could be of comfort, sounds like you'll be on a hard road for a while. Good luck with it :hug:

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lezah

Thanks guys - I'm a bit lost for words at the moment - despite having more than 24 hours 'sink' time

 

I guess one of my issues is that I can only relay my true fears via the internet - I can't voice my real concerns to Wayne or my family directly - seems my duty is to be the strong one

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KA

Lezah just wanted to add my support for you and let you know that you are doing an amazing job of coping with all that your family is going through.

 

Go easy on yourself and remember you are in my thoughts. Your story has touched so many of our lives and we really will walk this journey with you. Be as honest and brutal as you need to be, have a tantrum, rant and rave. Whatever you need we are here. xoxo

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flapjacks

Hi Lezah, I have just read all of this thread for the first time tonight.

 

Reading what you have written feels like you are speaking directly to me as your thoughts appear so coherant and accessible, but what you are writing about makes my heart sink for you all, but I am wishing all three of you the strength to get through this.

 

xxx

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insertemotion
Thanks guys - I'm a bit lost for words at the moment - despite having more than 24 hours 'sink' time

 

I guess one of my issues is that I can only relay my true fears via the internet - I can't voice my real concerns to Wayne or my family directly - seems my duty is to be the strong one

:bighug:

 

It's very very difficult looking after or even living with someone who is constantly sick. Dealing with side effects and drugs and visits and what ifs and unknowns, it does your head in.

 

I am the one who picks up after everyone else. When DH is sick (he has leukaemia) or depressed he can curl up in bed and hate the world and I keep the house going. There is no one who picks up after me and it gets tiring.

 

You need to find something or someone that is just yours. Someone you can talk to, something you can do, something selfish to replenish you as a person.

 

 

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ollies-mum

My heart feels so heavy for everyone here that has replied with loved ones that are sick. We never know how lucky we are until the good days are over. If only we could get rid of this horrible disease that destroys so many lives. My heart goes out to you all.

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KT1978

I can so relate to how you feel.

 

Somedays I am so scared and upset I cry all day. Other days I am so angry that I feel like a horrible person (I get angry at dp for not seeing a doctor earlier, for not being "healthier" basically blaming him for it). And other days we are just normal and it's like nothing is wrong. Sometimes he goes through it all and I'm the strong one.

 

I'm so sorry that your husband is still battling.

 

Have you got practical support? What about a "break"? I've been walking with a gf, it's good stress release.

 

Thinking of you.

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LambChop
One of the hardest things for me to hear was him telling me that I'm 'cold' when he's sick. Well, I am. I care, but I'm frustrated. I can't make it better and getting abused, ignored, groaned at and generally treated like a doormat isn't pleasant.

 

I've never been under any illusions of whats going to happen. I just don't think I'll ever be ready.

 

He's wrong about 'cold', its not the right word. The right word is 'warrior'. When he's sick you can't possibly even leak in the slightest hint of the universe of emotion you have, its lockdown time. The only way you can do what you do, is to not feel it while its happening. Otherwise, you'd be curled on the ground in the fetal position sobbing your heart out.

 

One day there will be time for you to process, but right now its about getting through each day.

 

Thinking of you, hoping for a peaceful Christmas with your family, sending you strength to carry on your journey.

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JRA

Oh Lezah.

 

I wish there was something I could say to make it better.

 

I know there isn't.

 

The best I can say is hoping for the best for you all, and yes, we are all here for you.

 

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jules363

Oh Lezah....i'm just so incredibly sorry to hear this :(

 

My husband accuses me of being cold from time to time as well, with regard to his battle with prostate cancer. I know he is scared, and I hate to see him like that, so I probably do seem cold, as I put a bit of a stiff upper lip on and tell him to get on with it. Cancer is a scary word, but up until now, he really hasn't suffered any ill effects, and it could be a lot worse. He goes in for surgery in a week and a half.

 

It's bloody hard, it's extremely hard for them, but for us also. I've got to keep life ticking along normally for four kids, one of them with a disability...I can support him, but I can't do it for him...

 

So gutted for you...this is not fair at all.

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**Kylie**

Lezah - I am soo sorry to read of your latest update!!! :( This all just sucks!!!

 

I can relate to what you said about your DH thinking you are "cold"......I think my DH thinks the same about me at times, but this is what I have to do to be able to cope, and its not at all that I don't care.....DH doesn't like to talk about his ACC too much (which I can understand, but I DO need to talk about it sometimes - I am sh*t scared that it will recur again!!)

 

I've had lots of people say to me that "you are so strong", but really I'm not!!! I still have the 2 kids to be strong for - if I fall to pieces - what happens with the kids???

 

Prayers coming your way for you and your DH.

 

My DH has to have yet another CT and oncologist visit on 19th December.....trying not to think too much about it at this stage.... ;)

 

 

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dolcengabbana

Lezah

 

I have just read the entire thread. What a journey and the way you have articulated the journey and your fears, joys, struggles and highlights was amazing.

 

My husband has a disability that when certain medical issues flare up I often get accused of being cold in the way i deal with them.

 

I have to be, to pick us up to keep going forward for us all I have to disassociate myself to a degree of what is happening. Becasue my option is to crumble emotionally and that won't happen.

 

I think you are amazing. I have enormous respect for you and your family.

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